The Westphals traveled to Gulf Shores, Ala., in early September for what was supposed to be a relaxing vacation at the beach with their families. The getaway went awry when their 6-month-old baby developed a life-threatening condition that required immediate emergency treatment.
MedlinePlus, a consumer-friendly health database produced by the National Library of Medicine, is the most trusted source for consumer health information. With over 1,000 health topics, MedlinePlus contains information on various diseases and conditions, drugs and supplements, medical tests, healthy recipes, health videos and provides access to a medical encyclopedia. Information is presented in an easy to read format and provides links to reputable resources on all types of health issues and conditions. This resource is also available in Spanish.
Genetics Home Reference (GHR) is a valuable genetics database that makes locating genetic information very easy with an extremely user friendly interface. Produced by the National Library of Medicine, GHR provides a vast array of information on the genetic factors, frequency, causes, and inheritance patterns of a disease with direct reference to gene mutation. Designed for the consumer, an introduction to the basic elements of genetics, referred in the database as primers, are provided so that a fundamental understanding of genetics can be gained.
The Genetic and Rare Diseases Information Center (GARD) is an excellent resource funded by the National Institutes of Health’s (NIH) National Center for Advancing Translational Sciences (NCATS) and the National Human Genome Research Institute (NHGRI). This resource provides information on rare and genetically related diseases for patients and families as a response to the gap of information between those in the health profession and the consumer. The database covers terms and conditions that are difficult to find elsewhere and those that have been frequently inquired about. Available in English and Spanish, the material presented in GARD ranges from very basic to complex.
The National Organization for Rare Disorders (NORD) is a patient advocacy organization comprised of over 300 organizations that serve those with rare disorders. The website is arranged in the following categories: Patients and Families, Patient Organizations, Clinicians and Researchers, Advocate, and Get Involved that can be easily navigated from the home page. References to Genetic and Rare Disease Information Center (GARD) and Genetic Home Reference (GHR) are throughout the site which adds to the wealth of information available for those living with a rare disease.
ClinicalTrials.gov is a database of privately and publicly funded clinical trials conducted worldwide. When presented with a rare disease or condition, having access to the most current research findings is important to patients and families. This information, found in clinical trials, allows a patient to find out what studies are being done along with the research findings. Patients can locate information on how to participate in a research study to advance the understanding of a disease, develop treatments and test interventions that may aid in the treatment of a condition.
Health Reach, produced by the National Library of Medicine, is a consumer friendly database that contains multicultural health information on a variety of health topics and conditions in over 60 languages. Materials can be found as print documents, illustrations, audio, and video and are culturally and linguistically appropriate. The materials are specifically aimed for those with limited English proficiency and have been developed by hospitals, clinics, government agencies and academic institutions. Consumers can search the database by broad topic and limit by language, format or author.
The Drug Information Portal is a comprehensive website for consumers to locate drug information from a variety of sources. Manufacturer drug labels as well as summary information from MedlinePlus and other specialized databases allow consumers to understand the use of a drug and its side effects, locate the identification of a drug and learn how the drug was used in clinical trials. Detailed articles from scholarly journal articles about the drug are also provided.
The Office on Women’s Health video resource link allow new mothers to gain a wealth of information on breast feeding and parenting. The Office on Women’s Health homepage provides additional information on women’s health and wellness, reproductive health and other diseases and conditions.
The neoQIC website provides educational videos for those with preterm infants and serves as a source of information for this specialized population. The short videos describe the experiences of women breastfeeding with their premature infants. An overview of the benefits of breastfeeding along with skin to skin contact and finding support when caring for a premature infant are provided. The videos are available in English and Spanish.